Burning scalp😝😝😝

[weathervane]

I have been suffering on and off lately from a burning pain in my scalp, with some raised spots . It gets particularly bad at night and it can be painful resting my head on the pillow . I have tried treatment shampoo and hydrocortisone which have helped a little bit but i did read something on line about using oil . I was wondering if anyone has tried this and what type of oil , also i would welcome other suggestions. I have sjogrens but i have other secondary problems which seem to multiply by the day ☹️☹️

[Georgie-girl]

Ouch, yes I know this feeling. I too have sjogrens and my scalp burns, itches and gets really painful at times. I also get episodes of crawling sensations over it but I have never found anything that helps to be honest. My GP suggested coal tar shampoo once but it didn't do very much so now I just stick to a mild shampoo and very gentle washing. When it flares up really bad I can't bear anything touching it so to sleep, I tend to scrunch up pillows under my shoulders and neck so my head hangs off of but not touching the pillow.

I'm interested to hear about the oil treatment though.

[weathervane in reply to Georgie-girl]

I do the same with my pillow !!! I will look for a mild oil and try it at night and i will post if it helps . Im just worrying that it might get worse if we get warmer weather

[Sara_A]

Are u sure it's not shingles? How long have u had it for?

[weathervane in reply to Sara_A]

Ive had it for a while now , its just at the back and right side of scalp . The hairdresser didnt say anything last week . Can you just get a patch on scalp??

[Hidden in reply to weathervane]

I have had extremely itchy scalp on and off all my life - more recently no sign of any dryness or flaking just this crazy itch.

But in your case it's painful and to me this strongly suggests neuropathic pain similar to what I get in my feet, legs and arms - where I can't sleep or bear any contact with bed clothes even and just walk about trying to cool my burning extremities down.

I've also had it in my mouth and lips on and off (BMS). I've concluded that the intensely itchy scalp is part of this too as it goes away when I'm on steroids or immunesuppresants.

Arthritis of the neck can cause the scalp to itch and burn too apparently - so a top rheumy told us at a talk I attended once.

As you know I'm sure, there are many Potential causes of neuropathy - but one of the main diseases that causes it is Sjögren's (second most common disease cause after Diabetes I believe). However as you are on Hydroxy and Rituximab I would defintely inform your rheumatology team in case it's an adverse effect of one of these rather than the Sjögren's.

Horrid I know, especially straight after the vertigo. Maybe your GP needs to refer you to a neurologist for some input too? Xx

[weathervane in reply to Hidden]

My head is in a twirl now as well as an itch !! I did read that neuropathic pain could be a cause - head massages drive me demented . I worry the doctor will think im a hypochondriac if i go with every problem

[Hidden in reply to weathervane]

Please never worry about seeming like a hypochondriac W - you wouldn't be on Rituximab if you didn't have a serious disease - which means you should always report new or worsening symptoms and always be taken seriously by your GP. It certainly does sound as if it's neuropathic but there are so many possible causes of neuropathy so this needs working sooner rather than later out I would say. X

[weathervane in reply to Hidden]

Thank you twitchy 😀I am making an app today as also need to discuss Ent referral, so will probably be next before i get one🙁 Ihope youhad a restful easter 💐

[Hidden in reply to weathervane]

Well my ent referral was bounced to audiology twice then back to GP again so ent must have a ⚠️ over my head or something?! I see my gp on Monday had to book it 3 weeks ago. Day before rheumy but like you I wanted to follow up on ent referral - starting to think pigs will have wings before I get to see one though! I would say you may need to push for neurology input over ENT as I've been informed (here) these are usually just surgeons with little knowledge or interest in autoimmunity. A neurologist would likely want to see an MRI of your neck I'm guessing to rule out cervical spondylitis as the culptit.

I've never even reported my itchy scalp but it's not painful like yours although itching can drive me totally nuts! I use Capasal herbal shampoo and occasional Betacap which knocks it on the head (forgive the pun). I have started taking extra D3 and B12 as feel these can't hurt and the extra D3 might help moods and pain a lot.

All is actually fab my end just now thanks - although finger tips still playing merry hell. I love my new house with all my heart - am happy happy happy - new Roman blinds arrived yesterday - new recliner chair I stuck my neck out for (v expensive) and feeling very excited and creative despite fingertip rubbish. 🤗🎉💃

[weathervane in reply to Hidden]

Enjoy your new home 💐💐💐💐it can take months for ent referrral 😕😕😕 low vit d can slso be culprit

[Hidden in reply to weathervane]

Thanks. Yes I got myself tested for vit D about 4 years ago and they phoned and said I was deficient.I've been prescribed AdCal D3 ever since but decided to add just one D3 tablet daily now to see if it helps with fatigue. X

[weathervane]

By that do you mean you add an extra d3 vitamin along side vit d d3

[Wendy39]

Hello weathervane

I have SCLE and have had a rash at the nape of my neck for about 9 years now - but only diagnosed about 3.5 years ago.

Last January 2016, my Knight (as in my Knight in Shining Armour, who rescued me), did a punch biopsy on it and it came back showing active lupus disease. This was a revalation, as I had shown two previous dermies the rash and they had basically said, "Well, I don't know what it is, but it isn't lupus."

Here's on recent post, showing a photo of it. One of the marks is the scar of my biospy.

healthunlocked.com/lupusuk/...

I have also experience crusty, weeping sores. One on scalp and behind my ears. But this was linked to sun exposure, before I knew I was photo-sensitive. I lostg. hair in those places and experienced hair thinning.

I have been given various steroids creams and scalp applications over the years, but to be honest, it only really is under control when my lupus is under control. As my post says, during my recent flare I am sure that rash spread and it became crusty and sore too. I have tried Body Shop natural shampoos and Holland and Barrett products, but none of it makes any difference.

I will follow your post with interest.

Wendy

[weathervane in reply to Wendy39]

Hi wendy , i managed to find black seed oil in a tiny health food shop , and i used it last night with great success . I just put on a small amount as i wasnt sure how it would react . The funny thing is i just found out my sister and brother in law have started using it for aches and pain, taking a spoonful a day. So i will see how this goes after a week or so and i may try a spoon full a day as well. I still have a bit of irritation but the burning has gone.

[weathervane]

Hi wendy , i did try the hair oil last night and it did give a bit of relief. I will keep applying it for a couple of nights an see if it makes a difference on the irritated areas. My whole scalp is a bit hypersensitive, i can wash my hair but too much pressure drive me mad .

[weathervane in reply to weathervane]

I have now used the hair oil for 3 night and it has given some relief in that i can rest my head on the pillow without the pain - but still some burning. The down side to using it 3 days in a row is that my hair feels a bit greasy . I was wondering if black seed oil would be a better alternative , has anyone used it on their scalp ??

[Wendy39 in reply to weathervane]

Hello again. Sorry for the delay in responding. I had an appt in London with a lupus specialist at the end of April and he looked at the various issues on my scalp. He could see the scarring alopecia and the damaged follicles and the rash at the nape of my neck that I am sure had grown and become crusty during a recent flare. A lot of my recent issues have been around my head - headaches, jaw pain, myalgia behind my eyes and my ears, rashes and sores etc. My GP has said to me before that my headaches are indicative of the CNS involvement with my lupus. The doctor in London asked about my sun sensitivity and what precautions I take. He said that wearing sun protection clothing, covering myself, wearing sunglasses and a floppy hat on a day out, using factor 50+ all year round etc is not enough for me. He told me my head needed more protection and I should be wearing a hat every time I go out. He wants to get that rash at the nape of my neck under control. I think ultimately, whatever I put on that rash hasn't made much of a difference. My angry, red, sometimes crusty and sore rash is active lupus and is coming from inside and unless my systemic illness is under control that rash will be an issue for me. I think that rash at the nape of my neck is like my own indicator of my disease activity. The doctor amended my diagnosis to SLE and he wants to add mepacrine into my drug treatment plan, as well as the 400mg hydroxy and 3g of MMF, as apparently he has had good results with this and skin issues. We'll see. How are you getting on with your scalp issues? Did you see your GP, as discussed above? Best wishes, Wendy

[weathervane in reply to Wendy39]

Hi wendy , i did ask the gp who had no idea so i will ask my rheumy when i see her in next couple of weeks. There is no rash apparently so maybe its a nerve thing ?i am continuing with black seed oil at the moment 😀

[Wendy39 in reply to weathervane]

Yes, make sure you ask. Sometimes these "little issues" are the key to much more than we think. I hope your Rheumy helps you out.

[weathervane in reply to Wendy39]

I have had so many wee issues lately that i forget to mention them . I will do a list for the rheumy and just hand it to her 😀

[Wendy39 in reply to weathervane]

Yes, you must! But then I have been guilty of going into the appointment, list in hand and then getting side tracked and coming out without checking I've ticked everything off - inevitably I've forgotten things and they go onto the list for the next time. The list is ever increasing. And when you prioritise somethings stay at the bottom of the list forever. Got to laugh. By the way, I have a note book that I use as a daily diary, to keep a record of how I am feeling every day. It's useful because there is no way I'd remember every little issue day to day.